T21journey Photos & Videos on Instagram

Photos from our recent shoot with the Ability Centre are in! 😀 very excited to be apart of their new family friendly campaign. They have made all of Elliot’s therapies a very easy and relaxed experience. We are very happy to be smiling on the back of a bus for them. Catch us driving around the Rockingham and Mandurah area from April 2nd onwards 😀🚌 #t21love#t21journey#busmodel#abilitycentre#downsyndromeadvocate

I meant to post this yesterday! I’ve been busy, kinda. Busy in Silhouette Studio designing shirts and stuff! I’ve got 4 out of 5 shirts made! And I’m super proud/excited for them! I am pretty sure WDSD is my second favorite holiday now. 🤷🏻‍♀️ Anyway - happy belated St Patty’s Day! We are The Lucky Few! I also made this shirt too. Lol. Here’s the perfect message for St. Patty’s Day, author unknown - “Who knows why Down Syndrome occurs? Why does the extra 21st chromosome stick to the cell when the fertilized egg begins its first cell division? It can be compared to what happens in nature to a field of clover. Usually, we see 3 leaves on each clover. Once in awhile, however, we find a clover that has an extra leaf- making it a four-leaf clover. We don’t know why Mother Nature decided to add that extra leaf; she just did. There is no obvious explanation- all of the clover plants grew in the same soil, were exposed to the same sun and rain, etc. Mother Nature just decided to add an extra leaf to one of the clover in the clover patch. This doesn’t make it better or not as good as the other clover- it just makes it different. Some people even believe it brings a person good luck when they find a four-leaf clover. It is much the same way with the extra chromosome. We don’t know why Mother Nature didn’t let the cell divide evenly, but she didn’t. She decided to add another chromosome to that baby’s cells. It doesn’t make the baby better or not as good as the other babies- it just makes him or her different. And if you find one of those babies, you are truly lucky for they are very special babies- who grow into very special people.”

Fact: I had some pretty good statistics typed out for this and then had to do other things and now it’s all gone. So today’s fact , you’ll get tomorrow because I’m salty. But, #dadtricks got me a smiley pic of Ryan!! 😍

Fact: Down syndrome can be hard, but we love Ryan for exactly who he is! .
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Remember when I got the prenatal diagnosis and then had to go to MFM every week, sometimes twice a week til Ryan got here and I HATED all the stupid ultrasound pictures they gave me because well I was so over it all and they always said like - toes, hands, ear, nose...😒 Here are just a few of the collection of pictures I have. I still saved them because even though I hated it and it was hard, even after the diagnosis, we were still excited to meet the guy. We were still in love with him. .
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I’ve been working on this for like two days! I made him a shirt for World Down Syndrome Day! And working on one for his sisters too! It’s frustrating learning the machine, but I’m getting it. Lol. I’m so proud of this shirt though. Lol. 💙💛💙💛

Fact of the day, we’re going into detail about low muscle tone - no fancy pic to go with because we are currently waiting for our car. So, let’s talk about low muscle tone not to be confused with low muscle strength! Our kiddos have low muscle tone, but believe me, that should not be mistaken for strength! Let me tell you, even I said - what low muscle tone? because he’s a strong little guy. Low muscle tone means that there is not enough tension in the muscle when it is resting. The low tone causes a slow reaction to a stimulus and can’t contract for as long as a typically developing child. Kids with low muscle tone have a hard time maintaining posture without support - so the sitting up milestone is HUGE for our kids! Muscle tone is controlled by the brain unconsciously and is not something that can be changed. HOWEVER, strengthening the muscles, actively contracting the muscles, can compensate for low muscle tone. So, when we do therapy, we are strengthening Ryan’s muscles to make up for his low muscle tone. He is going to be a strong guy. No doubt about it.

Started our day with a LONG POINTLESS genetics appointment. 😒 Don’t even get me started. BUT, we came home to a mailbox full of goodies!! We got our sweet gift from @alilsomethingextra321 (this super cute shirt!) It’s so cute I think it warms my heart to “UP syndrome”. I’m neurotic and like things to be called what they are. Yes, I’m coo coo. But this is such a cute shirt, I couldn’t even wait to put it on Ryan! P.S. GIVEAWAY going on RIGHT NOW on their page! Go enter! 🙌🏼
We also got our information resources to give to families and healthcare providers about @dsdn! Eyan was even blessing them! 🤣 Y’all, if you have a kid with Down syndrome and don’t know about the Down Syndrome Diagnosis Network, get to know them! This has been a staple network in our journey. There are groups for ALL! Moms and dads. We literally laugh and cry together - it’s insanely crazy how you can be so connected to people all over the world and it’s not just a “connection” - there is a connection! Lol. I love this network so much! 💙💛

First of all, there are NO WORDS for the amount of overwhelmingly loving support Ryan gets! It fills my heart. I am so so so thankful for each and every one of you all that support and follow Ryan! Y’all just don’t know! Ryan is set up for success with just that alone! BUT that’s not all! Our state has a program called First Steps which is a program for kiddos with disabilities, not just Down syndrome, that prepares our guys and gals for preschool! Our developmental interventionist (DI) will give Ryan a little therapy and if she ever feels like he needs more, then his team will grow! This DI is specifically from the @downsyndromeoflouisville - so she specializes in kiddos with Down syndrome! 👌🏼 How awesome is that! We love our DI, I even asked if she could come and talk when he’s healing from surgery - they are required to take a 6 week break. 🙁 And finally, Ryan has the upmost stimulating environment and family at home - he might turn it nutty like the rest of us! 🤭🤣

Just got this sweet gift from @alilsomethingextra321 today!! With a sweet note included! This is just in time for our next couple of Weeks and surgery soon! Starbucks is my fuel! And that cup is venti! 😂 Thank you so much!!

Did you see that? “ALL” people with Down syndrome experience cognitive delays. That’s a hard pill to swallow. No parent wants that for their kid. However, the key word isn’t all, it’s delays. Delays just mean it could take a little longer for our kiddos to get there - not to be confused with unable.
P.S. Keeping up with these daily facts is some work! As you can see, the later and later daily posts! Maybe I’ll do better tomorrow, but we’re starting our day off with an appointment! These next couple of weeks are super busy! 😕 💙💛

Everyday I worry about Elliot’s future less and less because I see this sibling love getting stronger. I know he’ll have a great circle of friends but one things for sure these two won’t leave his side #stronglove#threesmallwanderers#t21love#t21journey

I only have 45 minutes left in the day! This guy is FOUR MONTHS today! He is getting ready for his big surgery, just a few weeks away!! 😧 He is excelling at tummy time, rolling from tummy to back, and back to tummy assisted. He loves to clasp his hands together and put them in his mouth. He is a pretty happy fella. He sucks on the phantom bottle when he’s hungry and will cry when he is hangry! He’s almost got the reaching and grasping down. I think just a week or two and he’ll have it. He did an amazing smile the other day, and does them still but always too fast for me!! 😑 And he will talk your head off! He has the stinkiest gas. 😵 And he has been awake a lot more, so keeping me busy! His peak time is 6:30 AM right now, Week need to change that! I’m over it. We’re so proud of our guy and his smiles are the best! 💙💛

People with Down syndrome can do ANYTHING you can do! I often hear rants about moms of babies/kids with Down syndrome being told unsolicited stories about how the storyteller knows that a person with Down syndrome works at the local supermarket and that said person with Down syndrome is super sweet. What’s the rant about? I’m often a little confused because the person is working and friendly, etc. I guess it’s because the storyteller might be putting a limit on the person with Down syndromes abilities? I’ve never asked, so I don’t know. I feel like it’s taboo to ask what the fuss is about. 🤷🏻‍♀️ Truth is, what would society be without our people with disabilities, not only Down syndrome, working these positions? Truth is, people like me and you are too good and prideful to accept a minimum wage position. The way I see it is these guys are so proud to work and be included and accomplish a goal, it’s not the end for them. Just like it’s not the end for me or you. World Down Syndrome Day is March 21 and the cool kid thing to do is wear crazy socks! Who is participating?? Raise your hand! I’ve got our socks ordered from @johnscrazysocks, you should too!

It’s so crazy that when I was born the life expectancy for people with Down syndrome was only 25 years! I love how far times have come! Expected a whole nother lifetime and more! 🙌🏼 Swipe to see how we think Ryan will look at 60 years old! 🤣

There are a few common characteristics that people with Down syndrome have (see picture). I think this is why people with Down syndrome prefer the people first language. Because the characteristics are sometimes obvious and seeing that person as Down syndrome before the person can be judgmental. The characteristics do not define the person; every person is different. Every person has their own journey. Every person will have their ow personality. (Also, NOT ALWAYS happy!) I think one of the things on the list of what NOT to say to a mom of a child with Down syndrome is that the child “doesn’t look like it”. That doesn’t matter. It doesn’t make anyone feel better. It’s an observation...most babies you probably won’t even be able to tell the characteristics. If someone says that like it’s a good thing, it can be hurtful because, what if the child did look like it? They wouldn’t be cute anymore? Ryan is the cutest baby on the planet, even when it shows. I’m in a huge group of moms with babies with Down syndrome and EVERY SINGLE one of these babies are cuties and they all look different!! So, while we have some same characteristics, it does not mean everyone is the same. What I do appreciate is when we are at an appointment and the doctors let me tell them that he has Down syndrome, and they don’t say he doesn’t look like it - they say they suspected it but weren’t sure. But I understand when people mention it or something related, it’s all in good spirits.
One characteristic is upward slanting almond shaped eyes, Ryan has that...but he’s also got some Asian in him. The characteristic that I notice most, that others probably don’t, is the low muscle tone in his shoulders and arms.
Let’s not look at people with Down syndrome and automatically think Down syndrome or happy. Happy is the biggest myth. Ryan is the hungriest male I know.
However, we are blessed to have Ryan. Because a person with Down syndrome can really change your life. And he can’t even talk. He can barely smile! But I know when he wants to. Lol. I think that got off topic, but 🤷🏻‍♀️. The fact is the important part. The rest is opinion. Lol. Also, Ryan thinking about sleeping. Typical.

Guess what today is.....
March 7th, is Spread The Word To End The Word Day! This little man you see here can be described as cute, smart, silly, handsome, precious, and so on.... but definitely not as a RETARD! I will admit using that awful, hurtful word in the past loosely and ignorantly, (especially in my younger years). Not to anyone directly but it was in my vocabulary and used it when things didn't make sense to me. I am ashamed to say it and there is NO excuse for using such word. I know some people may use the r-word with no intent to offend anyone, especially those with Down syndrome or any other kind of condition/disability, but it DOES! Some, even use that word to describe something that's not working, messed up or just simply because that's the first word that comes to mind and just rolls off their tongue. Today, I want you to know my dear friend that we need to change our vocabulary. Even though to some it may seem like it's not a big deal, IT IS! The r-word is a hurtful word, a derogatory word that should NOT be used. If we want a better world, a world filled with love, harmony, and respect (something that's lacking now a days) it time we make a change! Let's pledge today to STOP the r-word and next time someone around you says it, please do your part and educate them.
#spreadthewordtoendtheword
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#proudmommy#theluckyfew#pureperfection#downrightperfect#perfectbabies#trisomy21love#cutebabies#t21journey#extracutechromosome#downsyndromeawareness#downssyndromebeauty#downsyndromelove#morealikethandifferent#dsdn#nothingdownaboutit#lifeisbetterwithyou

So there is a campaign called R-word! Fact is, today is “Spread The Word to End The Word” day. The r-word is the word “retard(ed)”. This word is exclusive, offensive, and derogatory. The campaign asks people to pledge to stop saying the r-word as a starting point to creating more accepting attitudes and communities for all people.
I don’t care for the word; however, I made my pledge to stop the use of the word. Why? Because it’s almost always used to describe something dumb or something a person doesn’t like. That’s offensive to our community. And if this could ever one day offend Ryan and I have to witness it - I’d be pretty heartbroken. My hope is that he will never know the word or have to hear it. The goal for his life is INclusion, not exclusion. Have you pledged to end the word?? Make your pledge at www.r-word.org ! 💙💛
Also, pic of his face because I love it. ☺️

Am I crazy to give my nine month old baby an iPad? well for Elliot it’s not, this is just another tool that we can use together to help reach his next goal. We use our key sign app to aid his language development and we’ll be downloading other apps to help with his OT. Thank you to the Ability Centre for ordering this for Elliot through his better start fund #abilitycentre#ipadbaby#t21love#t21journey

People with Down syndrome have an increased risk for certain medical conditions such as CHD, respiratory and hearing problems, Alzheimer’s, childhood leukemia and thyroid conditions. Many of these are treatable, so most people with DS can lead healthy lives.
I’d say DS is a pretty complex condition. It’s a lot to deal with and a lot to leap up with. So, for now Ryan has a CHD and reflux issues. And as you can see how late I’m posting this! It’s been a long day! A lot of kiddos with Down Syndrome have to have open heart surgery wishing the first year of life, sometimes multiple surgeries! And what makes these guys sting is that it is unbelievable that they can even live with a heart defect! I can’t even imagine. Can you even imagine your heart working double and you’re not even working out?! That’s just one thing to think about - their immune systems are pretty vulnerable. They’ve gotta deal with reflux. I don’t even want to think about leukemia. There’s no telling what medical conditions Ryan could develop; were just thankful that for right now, it’s not the entire list! 💙💛

A little late today! BUT, without further ado, here is your fact of the day! Down syndrome is the most commonly occurring chromosomal condition. About 1 in 700 babies are born with Down syndrome in the US. Ryan is 1 in 700. Truly the lucky few! Check out the last pic, I got him halfway smiling! He was smiling so big today, but of course it was off cam. 🤷🏻‍♀️ I also love it when his eyes are open so big!

These teethers!! 😍😍 I’m sure Ryan is far from teething, but I still love these! I won’t only use these for teething, but touching, grasping, feeling, reaching - you name it. I hang these things on his stroller so he can look at and reach and grab at them. I hang them on the side of his pack n play so when in there can see, reach, and grab, especially while doing tummy time. I use them when he’s laying on his back to place on his tummy and lips so he can feel a different texture. I pry his hands open to hold them because it’s so cute! But more importantly he needs to learn to grasp and open and close his hands and hold things. I love them, next thing I’m gonna get is a wooden teether with crinkle paper! I just can’t decide between the elephant or the cute bunny ears! They’re on @hellomylovedesigns !

So, now that tummy time has improved, we’re working on realizing we have arms and hands that actually do things!! Let me just tell you about Ryan and his hands. First of all, when he knows he’s getting a paci or bottle, if he gets his hands together and to his mouth, you WILL be fighting to get them apart or him to move them away. This is a time when I’m thinking who lied about the low muscle tone?! 🤔 He has a TIGHT grip and you will be prying his arms and fists out. And second of all, Ryan’s legs are much stronger than his arms, so I think when he wants to grab something, he kicks his legs around and that’s why he’s so wiggly! 😑 I think so because when his toys are hanging and he is focused on them and thinking about them, he kicks uncontrollably and I think it’s because he actually wants to touch them. He doesn’t always know what to do with his hands as seen in these pictures, he only reaches in the center when there is a bottle or pacifier there. So I’m working hard to get him to grab and touch and reach.

There are three types of Down syndrome!
Trisomy 21 - most common, 95% of cases. This is when there are three, rather than two, number 21 chromosomes in every cell of the body. This is what Ryan was diagnosed with.
Translocation - 4% of cases. This is when a part of the 21st chromosome breaks off and stick to another chromosome, typically number 14.
Mosaicism - 1%. This is when the extra chromosome 21 is not present in all cells of the body, causing a mixture of some cells having 46 chromosomes and some having 47.
Here’s the kicker. I’d be lying if at first I didn’t feel like I wanted Ryan to have Mosaicism Down syndrome because I thought it would be easier. But guess what, it doesn’t matter - you either have Down syndrome or you don’t. There’s no in between or meter on how easy or hard it will be. You’re either gonna work hard or you’re not. I think that’s the same with typical kids.
Also, pic of Ryan because I gotta keep your attention!! 🤣🤩💙💛

I feel like I have slacked on the gram today! I posted on Facebook! And I was napping with Ryan! Lol. Anyway, so in light of World Down Syndrome Day coming up, I’m sharing a fact a day until then! So the first fact is that World Down Syndrome Day (WDSD) is on March 21 - 3/21! The reason why is because when Down Syndrome occurs, there are three copies of the 21st chromosome when typically there are two. It’s also called Trisomy 21 or T21. So, typically we have 46 chromosomes in our DNA, but in Down Syndrome there are 47 chromosomes. #swipeleft for a NEVER BEFORE SEEN picture of Ryan’s DNA also called karyotype. I have been saving this picture for months to share with you all! I thought it was so cool to see his DNA all paired up. Check out the 21, there are three there. 😉🤟🏼✌🏼☝🏼 💙💛

Ryan did a WHOLE HOUR of therapy today without whining! He did awesome. I do think he tried to stop the session a few times by tooting - they are potent. Poor Hannah. Nothing compares. It’s terrible. She knows his tricks. Our next milestone is knowing what our hands can do, arm strength, and side lying.
P.S. This nap is from yesterday!! 😉 Still cute though!